Down syndrome center calendar features children living with disorder

Monday

Oct 27, 2008 at 12:01 AMOct 27, 2008 at 4:23 AM

On Tuesday afternoons, 4-year-old Faith Kosak spends time in the living room singing songs and dancing the motions to “Head, shoulders, knees and toes.” She’s just like most other 4-year-olds, except she has Trisomy 21 — the triplication of the 21st chromosome, called Down syndrome. Faith is one of three Rock River Valley girls featured in the 2009 calendar Inspire, produced by GiGi’s Playhouse.

Cathy Bayer

On Tuesday afternoons, 4-year-old Faith Kosak spends time in the living room singing songs and dancing the motions to “Head, shoulders, knees and toes.”

She sits on a short white stool and sings along with her teacher, Riley Rohrer. When Rohrer’s arms raise up to make an round shape representing the sun for another song, Faith grabs hold of her arms and sways back and forth.

Faith giggles, sings along, takes off her shoe in the middle of the lesson and loves attention and applause. She also offers Rohrer several kisses while Rohrer sings and tells stories.

She’s just like most other 4-year-olds, except she has Trisomy 21 — the triplication of the 21st chromosome, called Down syndrome.

Down syndrome is a common genetic disorder where a child is born with 47 rather than 46 chromosomes, resulting in developmental delays, mental retardation, low muscle tone and other possible effects. October is Down syndrome Awareness Month.

Having Down syndrome comes with challenges, said Faith’s mom, Michelle Kosak. When Faith was 6 months old, she had open heart surgery to repair a hole in the center of her four heart chambers.

Speech is one of the last things to develop in kids with Down, but Faith is trying. A “pa” sound means please, and a “mmm” sound means more.

But she knows sign language and some of her words are clear.

“She just learns things at a slower level,” Kosak said. “She’s the same as you, me, everybody else.”

Faith is one of three local girls featured in the 2009 calendar Inspire, produced by GiGi’s Playhouse.

GiGi’s Playhouses are nonprofit Down syndrome awareness centers. They offer activities, resources, educational programs and support for individuals with Down syndrome, their families and the community.

It’s funded through private donations and offers its services — at no cost — to people with Down syndrome and their families.

Nancy Gianni opened GiGi’s Playhouse in 2003 after experiencing negativity from people with her daughter GiGi, now 6.

It’s true, she was afraid of what her life might be like having a child with Down syndrome, but her fear soon melted away — although it wasn’t so easy for others.

People said that Down syndrome was such a terrible thing and told Gianni how sorry they were for her, she said.

“I just really wanted people to see what I was living,” she said.

The center now has locations in Hoffman Estates, Plainfield, McHenry and Chicago, and faces of kids with Down syndrome are all over the playhouse, said Jenni Von Tobel, executive director at the Hoffman Estates location.

The calendar is a fundraiser and another way to spread awareness about Down syndrome.

“The message is for people to try to get out there and be a better person,” Gianni said. “What better way to give that example than with children with Down syndrome?

“The more you see that face, the less different it becomes,” Von Tobel added.

Some other local faces are featured in the calendar: 2-year-old Michaela Jones is featured in the calendar’s month of June. She’s the daughter of Shannon and Sam Jones of Rockford.

Michaela is very much like children her age, her mom said, and she loves to blow kisses. In fact, every time Michaela sees herself on the calendar’s June page, she blows kisses to her picture.

Khali Gustafson, 4, is the daughter of Julie and Barry Gustafson of Roscoe. She’s featured in the month of May.

When the family is out for dinner, Khali is the first to say hi to people, and she’ll usually walk around to every table to say hello, then go around again to say goodbye before they leave, Julie Gustafson said.

The Gustafsons are inspired by their daughter. They see her strong will and determination, and she always does her best, Julie said.

“If she can do it, then we can do it,” she said.

When the Kosaks found out Faith had Down syndrome, they were shocked, Michelle said, but adds, “Five years later we see why she was given to us.”

Things are challenging now for the Kosaks — Mike was deployed Oct. 1 for a tour of duty in Afghanistan.

He isn’t scheduled to return until September.

It’s been hard for Michelle and her four children, and two of the couple’s children have daddy dolls — a stuffed doll with Mike’s picture on it. There’s also a voice recorder inside where Mike left messages for the kids.

“She lugs her daddy doll everywhere,” Michelle said.

Michelle thinks Faith will someday be a music teacher or regular classroom teacher.

When Faith is at school, she’s eager to go to the chalk board and point out the day on the calendar.

“She’s got a smile that just lights her whole face up,” Michelle said. “She’s just a miracle to us.”

Cathy Bayer can be reached at (815) 987-1369 or cbayer@rrstar.com.

National awareness

Republican vice presidential candidate Sarah Palin recently put a public face on Down syndrome with her infant son, Trig.

Palin could have a positive impact in the country, said Julie Gustafson, mother of 4-year-old Khali Gustafson of Roscoe who has Down syndrome, by having someone who understands the need for more services for kids with disabilities.

Palin’s family being in the news also has brought more awareness to Down syndrome, said Jenni Von Tobel, executive director of Gigi’s Playhouse in Hoffman Estates. Gigi’s Playhouse, a nonprofit Down syndrome awareness center, has locations in Chicago and the suburbs.

How you can help

Calendars cost $12, and proceeds from the calendar fund programs at GiGi’s Playhouse.

To purchase a calendar or for more information about GiGi's Playhouse, visit gigisplayhouse.com or call (847) 885-7529.